Is this possible?

Yes, sometimes lesions don't show up at first or they are too small to detect.

This being true and all MS drug trials basing their results on the number of lesions they see on MRIs, what does this say about the accuracy of the trial data? Just a thought.

Harry

I agree, Harry . . . lesions (and/or relapses) are probably not a good measure of efficacy. In fact, I don't think # of lesions are even a legitimate measure, are they? Isn't the primary measure a reduction in disease progression (as measured by our EDSS), and secondary, a reduction in relapses?

I think this is just a new way to try to market the efficacy of our meds . . . "More patients are disease-free with X med". What the he!! is "disease-free" . . . guess that means we are cured, huh?

Lesions, no lesions, inflammation, no inflammation, 3 months of good EDSS results . . .

TIME will tell.

Cherie

Thanks so much for all of you who have responded, I really appreciate it. I can see why so many just hang around .

One other question in regards to my case, I started with the pins and needles in my left hand last year which lasted several weeks, I can't remember exactly how long but eventually it went away completely. Then I experienced it again several times with periods of nothing (making me think it was a fluke). Then my right hand started. Then eventually my feet. Now I feel the pins and needles further up each arm and leg. It seems to me that this is a sign of progression. I've only had one time where the pins and needles turned into a very painful experience for three days, it felt like fire in my hands (it had not progressed to my feet/legs yet). Has anyone else experienced this or heard of this in relation to MS?

I'm just trying to get a feel for this. If it's not MS then great but if it is then maybe I'll get a better handle on what to do and how to treat it?

Thanks for all the support.

Right now the Dr. is suggesting a lot of destressing activities, he is a family practitioner who practices integrative medicine which is why I'm seeing him, I like that approach. He's suggesting Raiki and visualization. I definitely believe in these things but my gut tells me that it's more than just stress causing these symptoms. I almost just wish that the MRI would show something if it is MS, it's frustrating.

I presented with a numbish, tingling sensation that crept up the whole right side of my body. Very distressing to say the least. My doc would have bet me $100 that I had MS based on my symptoms and history....then I had an MRI and nothing! All that really means is they can not give a definate diagnosis without those lesions! Anyway, doc said "Oh well, lets just see what happens since you are feeling better" She had me return in six months for a follow up and I told her I was feeling much better but had a new little funny sensation over my top lip.....burning, tingling and numbish. Well, she opted for another MRI scan and (in that six month time span AND actually feeling BETTER) I had lots of lesions on the new MRI. Now they show up after 12 years of wierd medical issues that know one could explain.....I guess I finally nailed the right time and the right place with the right doc in the right amount of disease activity. Whatever it is...it is SOMETHING so don't allow yourself to feel crazy....just stay proactive and write down everything you experience on a daily basis so your doctor can actively see the patterns.
Let him see a normal week for you.
V.A. doesn't have a specialist for you? I was a military wife for 20 years and I can say I didn't always care for the medical care....hope you can get some help soon. Big Hugs

kristen8283, I just registered as a member to this web site just a few minutes ago. I know what your going through, it's called "medical hell". It took about 6 years for me to be diagnosed and I was just diagnosed last October. I'm so tired of incompetent doctors. they did one non-contrasting MRI on my brain with a very weak MRI and from that result declared that I absolutely did not have MS and never looked in that direction again. I had to do all my own research and demand the tests that I thought I needed. Finally I got a contrasting MRI of my spine and low and behold that is where my lesions are. I've got 2 very small lesions on my brain that could not be detected on a non-contrasting MRI, my lesions are on my spine. I finally found a MS specialist that found it, he did contrasting and non-contrasting of my brain and spine. He is the Dr. that finally found it. He said he had heard many stories just like mine. I thought I was loosing my mind! I'm dealing with anger issues right now, but it's not because of having MS, it's about how I've been treated, not only by the medical community but also by my friends. I used to run 2 miles every morning until the weakness, balance and fatigue overcame me, I was very fit and healthy, a size 6. Then of course I gained weight and a friend told me that the only thing wrong with me was that I was just getting older and possibly going through menopause and that I was just going to have accept that I wasn't going to be slim and pretty all my life. People said that I couldn't have MS because I was too old. The last four years have been so hard, there is no support group in our area and I'm angry. Again I'm not angry about having MS as a matter of fact I felt victorious when I found out that I did indeed have MS. I had done so much research on so many different diseases and it always came back to MS. It's been the treatment from some friends and my spouse that has caused this anger, I wasn't able to even say MS in my home or around some friends, so I just kept my mouth shut.
Keep searching for answers, find a Dr. somewhere that will listen to you. I did and it's really paid off. Thanks for letting me vent.

There are a LOT of people here who are in limbo because they don't show any lesions on their MRI. There are folks who have white matter damage showing when they have a high Tesla MRI, but none when a lower T MRI is used.

MS attacks the gray matter in the brain too. The current theory is that it may be doing silent damage to the gray matter before any white matter damage shows.

The criteria for diagnosis (McDonald) calls for MRI lesions to be present.
The older criteria for diagnosis (Poser) also places a high priority on MRI findings
An even older criteria (Schumacher) did NOT call for MRI lesions, but that is because they didn't have MRI back then.

IMHO-There are a LOT of old neuros out there who do not keep up on clinical advances in diagnostic criteria because the way they have been trained has always worked for them OR they are not seeing people with MS, and when they suspect MS they send the person to a specialist. Some feel that the diagnosis will adversely affect the quality of life of the person and don't label it as MS, but just treat the symptoms.
My aunt has one of those neuros and I am shoving her kicking and screaming to a better doc so she can get a diagnosis for what ails her rather than just "treat the symptoms" treatment.

Further to what the others have said, they can really just not even be there. Disease activity is what causes lesions so the disease activity comes first.

Kristen, your anxiety is apparent, as well as understandable! There's probably not a person on this board who hasn't gone through what you're feeling. Keep us posted on your testing and know that you are not alone, whatever the outcome is! We have people here who have been officially dxed, people who have not been dxed with anything yet and even some people who have found out what they have is not MS but just stick around because we're all so lovable.

I just want to add that when you go through testing and get a Lyme test, try to do it through IGeneX. Just understand that one of the dilemmas with Lyme is that there can not only be false negatives but also false positives.

Yes.

I didn't have lesions when I was dx'd with MS and I would have been dx'd under the Poser Criteria.

I often wonder if in my case I was just lucky to be referred to a neuro who had a professor that wrote a book about MS.

Best wishes, kristen.